Friday, 25 July 2014

Family Life with Sensory Processing Disorder (Guest Post)

There follows a guest post from my lovely friend Emma, who has kindly agreed to write, in her own words, about her experience of a condition that affects up to one in twenty children, to varying degrees. I think she's amazing and I hope her story will encourage other families facing similar challenges.

I am a mum of 3 children, D is 3,
L is 11 and J is 5 and has a Sensory Processing Disorder (SPD) and we all live
together with dad too. Having a child with SPD is a daily battle, challenging,
difficult, exhausting but also very rewarding.
His condition affects the whole family in one way or another, which
often makes me feel really guilty for my other children. We have all had to
make sacrifices and will continue to do so.

J’s behaviour can be very
unpredictable and can change in the space of a second. He changes his mind like
the weather which can be very frustrating. For instance just this morning he
asked for a bacon sandwich for breakfast
because dad was having one and after it was made he cried and said he wanted
honey on toast, bacon is too chewy. There is never a dull moment when you have
a child with SPD and they will be sure to keep you busy from morning until
night (and if you are really unlucky all through the night too).

J’s sleeping pattern has only
just started to have some consistency. Up until recently getting him to sleep
was a chore in itself and I would sometimes have to lie with him for over two
hours stroking his back, applying pressure to his shoulders, tickling his nose
and above his eyes – whatever he asked, by that time I am too exhausted to
protest. This would interrupt the whole houses routine and would leave us all
tired the next day. As he also has hypermobility he sometimes wakes through the
night because his legs are sore and he will cry in agony. So I will have to
massage his legs until the calpol / Ibuprofen kicks in and he drifts off to
sleep again.

J has meltdowns, the worst temper
tantrums you will ever see in a child. Calming him down can be impossible and
we are only now learning about the importance of preventing the build up to a
meltdown and recognising them before they happen. This is the biggest challenge
we are facing at this stage! I will be going on a course for parents to
understand SPD in the near future which the Occupational Therapist has
organised.

J can be violent at times
although this has improved slightly, probably to the fact we are learning when
to intervene before he lashes out. He doesn’t mean to hurt the other person, he
isn’t trying to be horrid, he just can’t help it. Even if the other person cries,
rarely does J show any empathy and it is like he doesn’t understand why they
are even upset. This can be difficult in itself and can often cause resentment
for the person on the receiving end. How do you explain that to his 3 year old
sister?

J is very sensitive also in many
ways. If J is having a stressful day, even the slightest brush past him can
send him crashing to the floor crying his eyes out like he’s just been hit by a
ball. He likes to sleep with just his nappy on at night, rarely with a duvet
on, with a fan blowing on him. We haven’t decided if it is the cold air or the
humming noise which comforts him most, but I suspect it is a combination of the
both which helps and it is since doing this his sleep pattern has improved
greatly.

For me as a mum, the best moment
is when he comes to me for a hug or a kiss or tells me he loves me. With my
other children often you can find a way to steal a kiss without a huge drama
but for my son, I couldn’t just grab him and kiss him all over his face like I
do with my daughters; it is difficult to know whether you might get away with
it or whether he would scream at you and so it is best to wait until he comes
to you or you ask him and he agrees. Anything which catches him by surprise can
cause very dramatic reactions. The majority of this post sounds like I am being
negative, but the truth is there is no way to make this sound any better. This
is all true! It really happens. But having him teaches me so many new things, I
have a completely different level of patience, I face problem solving many
times a day, but I do love it! Having my son has taught me so many new things,
about other children, about a whole world completely alien to me and about me
as a person and as a mum.

The next biggest challenge I face
is the summer holidays! Keeping any child entertained during the 6 week break
is sometimes exhausting but a child with SPD has to be kept busy otherwise they
will get bored which is guaranteed to be followed by a meltdown. In the garden
we have set up the paddling pool, a swing set and bought a few activities for
the garden like hula hoops, a Frisbee, inflatable hoppers etc. The swing set is
probably the most important thing to us as many children benefit hugely from
the swinging sensation and this can help them to feel grounded and so I often
suggest throughout the day for J to go on the swing. I will have to be very organised if I am to
reduce the stress in the house to a minimum and think of some fun things to do
to keep them all busy as well as activities which will be good for his senses.

I will be sharing our experiences
over the summer holidays and I hope that I can provide other parents with ideas
to help them also during the holidays.

Water

My children are definitely water babies! Today we had a water
fight. Dad grabbed J and dunked him in the pool which nearly led to a meltdown
– he wasn’t expecting it and he started to cry and shout at him. That was until
I distracted him with a water balloon to throw at dad which he loved. I have
read that throwing is a great activity to do with a child with SPD and so
thought we would give this a go. We filled the pool with water balloons and my
daughter and her friend joined in too. Jack absolutely loved this. He often
hits himself or pinches himself, common in SPD and so this was great for him as
he could hit himself over the head with the balloons and it was completely safe
and it satisfied his needs at that time! He was in his element. Such a simple
activity yet great for him and kept him entertained for hours! He loved the feel of the balloons filled and
shaping them, biting small holes in them to squirt water.

My son with Asperger's has some similar traits. He was really funny about the feel of clothes & shoes, he cried a lot and said his underpants were "scratchy" (they weren't except to him) he also ripped labels out of clothes and he wanted his foods very very plain and didn't like certain textures.